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Why do I have RunSickboyRun.com?

Blessed with Cystic Fibrosis and a positive attitude, it is my duty and passion to show the cystic fibrosis community that anything is possible through this blog that discusses the daily trials and triumphs that accompany not only life, but a CF life. RSBR is a hub for comfort, information, advice, encouragement and understanding. It is a place where no question is ignored, no accomplishment is too small, no goal is too big, and every comment is cherished.

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Saturday, January 2, 2010

...is not to make a resolution. Not that there isn't anything I want to get done or goals I want to meet, but I'm not going to tie them to any one day. If you look up resolution in the dictionary you'll find something like "a firm decision to carry out an action", well, I did that a long time ago. Since the day I was able to form my own thoughts, I've chose to live and more importantly, to do whatever necessary to live up to a standard that I've set. I admit, there has been times that I've been off track, but something always happens to whip me back into focus.

2009 proved to be a year that got me back on track. I think that in the couple prior years preceding, I had become comfortable with my lung function hovering around the low 60's. It took a crash and burn in the beginning of 2009 to snap me out of my comfort zone. Many good things have come out of that, but the most powerful has been getting my attitude back that "just being comfortable" is not acceptable. So actually, I changed my mind, here's my resolution for 2010: I REFUSE to be comfortable with my lung function at any point this year!

Thursday, December 31, 2009

January- I came back from China on the 17th and promptly went into the emergency room. I had been coughing up cups of blood at a time for 3 days in a row and couldn't walk more than 50 yards without having to take a break. My incredibly low sats and inability to breath without a bi-pap landed me in the ICU.

February- I celebrated my 29th birthday in the Hole. My PFTs were steadily improving, but not at the rate I was accustom to. At that point I would take just about anything though, since I checked in with an FEV1 in the 20's. This is when the light really started to flicker.

March- I got released from the hospital exactly 50 days from the time I had entered. It was my longest trip ever and one that I will never forget. At my release, I had an FEV1 of 51%. I knew I had to make a change. I started RunSickboyRun.com as a way to hold myself accountable while taking on the task of running one full mile.

April- Within 5 weeks out of the hospital I had gotten my FEV1 up to 61%, not quite where I wanted to be, but definitely moving in the right direction. I had still not run a mile and was wondering if running was really the monster that I wanted to take on.

May- This month was full of fundraisers for the Cystic Fibrosis Foundation. I've been very honored to be invited to speak at many events over the last handful of years and hope to continue to do so.

June- June was a big month with the annual family trip to Rocky Point, a trip to Flagstaff with Mandi and also the celebration of one year together with the love of my life. This was also when I realized that other people were starting to benefit from hearing my story and wanted to know more than just how far I was running. The transformation of RSR begins.

July- This was a big month for my "running career". I was seen by a foot doctor who was able to craft me some specially made orthotics to help with the extreme foot pain I was having while running. I also went back into the Hole for a short two week stay, but this time I entered with an FEV1 of 59%, 8% higher than when I left the Hole in March!

August- New structure for RSR is fully implemented with added features like Spotlight Sunday and Top Ten Tuesday! On a personal note, I started a clinical trial for the TOBI vs AZLI study. I was randomized to TOBI, so now I simply get paid to do my treatments :)

September- This was a turning point month for both me personally and this blog. While visiting Mandi's grammy down in Florida, I ran my first mile!!! In fact, I ran 1.5 miles that day!! As for the blog, it got some national exposure when I was named one of five winners for the Nature Made: Fuel Your Greatness competition.

October- We had another good month in the press when a Tucson newspaper ran a story about Mandi and I and our desire to increase my lung function through running. We were also very fortunate that it was picked up nationally by over 20 print and online publications. The daily unique visitors to RunSickboyRun are really starting to swell. I also had an FEV1 of 68%, my best PFTs since 2005!

November- Let's see, what happened in November, oh, that's right, I got engaged!!!! We also had a busy month with CysticLife as we traveled to Dallas, Texas to serve as a source of education and inspiration at the CF Concert Series. Upon my return, I was hospitalized again and saw my FEV1 drop to 41% within my first two weeks in the Hole. We also hit the over 100,000 hits mark on RunSickboyRun!

December- I got out of the Hole just in time for the holiday's with an FEV1 of 60%. It was a great month full of shopping, family and friends. I also had sinus irrigations done for the first time and my house got robbed while I was in the hospital. It was definitely a different kind of a month, but certainly had WAY more good than bad. I've had trouble getting back into rhythm with my workouts but finally got back in the saddle late in the month. 2010 better watch out!!

I'm so thankful for this past year as it has taught me much about myself and what we as a community can achieve if we put our mind to it. I have met so many wonderful people through this blog that I now call my friends and have been able to form relationships that I hope last a life-time. This has undoubtedly been one of the best years of my life and many of you are to thank for that. Here's the scary part though, it's only going to get better in 2010!!!

Wednesday, December 30, 2009

It's almost embarrassing to admit it, but I finally got back into the gym yesterday. I got out of the Hole on December 17th and it took me a full 12 days to get back into the land of dumbbells and bench presses. I really wish I had some great excuse to give you guys, but I really don't. Anything I could offer up would be just that, a poor excuse. Bottom line, I made the CHOICE not to go to the gym until yesterday and it's one that I hope I won't regret.

It's such a crazy feeling being back in that place. What's an even crazier feeling is actually lifting the weights. I fully expect to be incredibly sore tomorrow. We did some circuit training to get back into the groove and basically hopped from one machine to the next. The key now will be consistency. I'm usually pretty good about going once I get back into my routine, it's just a matter of actually getting back into my routine. Yesterday was surely a huge step towards that.

Today I hope to take another big step. I've been walking since I've gotten out of the Hole, but I have yet to get a run in. I thinking that today's the day to break out the old running shoes. I'm REALLY looking forward to it as I feel that nothing is better for me right now than running. I may only last 5 minutes, but that's certainly longer than I ran all of last week! As long as I'm making progress and moving forward I'm happy. It's those steps back that I try to avoid :)

Now the question is, in a very Jerry Maguire kind of a way, who's coming with me? Who will join me in my quest to get back into the gym and running regularly since leaving the hospital? Anybody???

Tuesday, December 29, 2009

I'm constantly pleading with parents of CF children to not put their kids in a bubble. Not only does it end with the child being socially awkward, but it can also cause the child's immune system to be weakened. I have often pointed to studies that site that it is actually good for children to get sick in order to build up their immunities. I'd be much better to have a nasty cold as a kid with nice pink lungs than to get a nasty cold that you can't fight off with old and damaged lungs, like me.

I was given free reign as a kid and was not held back at all. In fact, I remember my mom encouraging me to play with kids who had chicken pox so I could get them out if the way (I never did get those)! Bottom line: Let your kids be kids. Kids like to get dirty. They like to play with other messy snotty nosed kids. They like to roll around in the dirt. Hopefully, by the time they get to be an old man like me, they'll be immune to every cold, flu, or ____ bug out there!

I also wanted to share an interesting article that falls along these same lines. I know a lot of parents out there who are disinfectant freaks. Now, I'm not saying to totally hold the hand sanitizer and whatever you clean your house with, but maybe you'll want to back off a bit after reading this article.

ScienceDaily (Dec. 27, 2009) — Using disinfectants could cause bacteria to become resistant to antibiotics as well as the disinfectant itself, according to research published in the January issue of Microbiology. The findings could have important implications for how the spread of infection is managed in hospital settings.

Researchers from the National University of Ireland in Galway found that by adding increasing amounts of disinfectant to laboratory cultures ofPseudomonas aeruginosa, the bacteria could adapt to survive not only the disinfectant but also ciprofloxacin -- a commonly-prescribed antibiotic -- even without being exposed to it. The researchers showed that the bacteria had adapted to more efficiently pump out antimicrobial agents (disinfectant and antibiotic) from the bacterial cell. The adapted bacteria also had a mutation in their DNA that allowed them to resist ciprofloxacin-type antibiotics specifically.

P. aeruginosa is an opportunistic bacterium that can cause a wide range of infections in people with weak immune systems and those with diseases such as cystic fibrosis (CF) and diabetes. P. aeruginosa is an important cause of hospital-acquired infections. Disinfectants are used to kill bacteria on surfaces to prevent their spread. If the bacteria manage to survive and go on to infect patients, antibiotics are used to treat them. Bacteria that can resist both these control points may be a serious threat to hospital patients.

Importantly, the study showed that when very small non-lethal amounts of disinfectant were added to the bacteria in culture, the adapted bacteria were more likely to survive compared to the non-adapted bacteria. Dr. Gerard Fleming, who led the study, said, "In principle this means that residue from incorrectly diluted disinfectants left on hospital surfaces could promote the growth of antibiotic-resistant bacteria. What is more worrying is that bacteria seem to be able to adapt to resist antibiotics without even being exposed to them."

Dr. Fleming also stressed the importance of studying the environmental factors that might promote antibiotic resistance. "We need to investigate the effects of using more than one type of disinfectant on promoting antibiotic-resistant strains. This will increase the effectiveness of both our first and second lines of defence against hospital-acquired infections," he said.

Keep in mind, this is coming from a guy who washed his hands maybe once a week and just started cleaning his nebs consistently earlier this year, so by no means am I the "clean police". So although I wouldn't advocate using my extreme of "paying pretty much no attention at all to clean vs not clean"; I would encourage you to balance life with your level of spotlessness :)

Monday, December 28, 2009

I have a new year's resolution...kind of...that I wanted to share with all of you. This year, my resolution is to be more supportive. Now, I feel that I am extremely supportive by most standards, but I have realized this holiday season that I'm not exactly doing my part to get Ronnie back on track with his treatments and exercise. As most of you know and experience, the holiday season has a way of throwing routines out of whack. For Ronnie and I, this is very much the case. We haven't gotten back into our work out routine since he got out, we've been running around and having to squeeze in shortened treatments and even skipping a few here and there. While this is understandable and even somewhat acceptable for a week, but it's inexcusable beyond that. (Although I must say that when I say he's been slacking on treatments, I mean some days only getting in 3 or 2 and a quick 3rd. He never missed a morning or night.)

Now comes into play my new year's resolution...I think I need to step up my support in order to get back on track, together. I have to admit, ever since my half marathon, I have NOT felt like running or even really working out. But I need to remember, it's not so much about what I do or don't feel like doing. I need to say, "we're going to the gym" regardless, to encourage Ronnie to get back into the workout groove, even if I don't so much feel like it. He did that for me A LOT these last 6 months, and I need to do the same for him. We are a team. So even when I don't feel like working out for ME; I need to feel like working out for HIM. In regards to his treatments, I should come clean. You see, this last week, I have been VERY selfish. I have wanted to run around all day, keep up with my parents agenda, done what I wanted to do. But I need to break that streak and make sure that I put Ronnie's treatments back on my priority list, and right at the top. Ronnie would have been a lot better about his treatments this week if I didn't demand he follow my agenda.

I know it's not quite the new year yet, but it will be before I post again, so I wanted to make sure I verbalized my new year's resolution so that you all would hold me accountable and ask us how we were doing on getting back into our routine. Have you all thought about your new year's resolutions? Any good ones you've thought of? Any you want to come clean with so we can hold you accountable? I want to hear them and PLEASE ask us how we're doing getting back into the workout and treatment grove after this holiday season.

Sunday, December 27, 2009

Welcome to the first edition of Spotlight Sunday. Today, I am featuring a blog that has five simple rules to keep in mind while raising a child with Cystic Fibrosis. Lauren does a great job highlighting the "rules" her fabulous mother taught her while she was growing up (and I guarantee still hold true today). Make sure to stop by Lauren's blog "I Have CF. So What!?" and leave her some comments. You can get to her blog by clicking on the title "How I was Raised". If you'd like to see some blogs that I have written about my mom, please click here.

I've gotten comments about how my mom raised me to be so positive. So here is a post that me and my mom came up with:

Here are the five rules she lives by:

1) Always look on the bright side:

My mom always maintained that we must look on the bright side. If I had to go in the hospital it was "Well at least you'll be feeling better for the rest of the school year!" The rationale for doing my treatments was that it would make me feel better for the rest of the DAY. If I got a new medicine she said "well at least it's just a pill!" and I just added it to the rest of my pills. Looking on the bright side made everything seem o.k.

2) Never let em see ya sweat, but be honest in the most positive way possible

My mom NEVER let me see her worry. She admits that when I was in the hospital she'd be up all night worrying, or when she hears me coughing at night she is concerned. But I never saw that. It's ok that she was worried and scared, she's allowed to be... but the fact that I didn't know how hard CF was supposed to be made me think it WASN'T hard. However, she did deal with it matter of factly around me. She didn't give me false expectations, she was honest about how I would feel in the hospital but she didn't make me afraid when she told me these things. I remember when I was in the hospital with hemoptysis (coughing up blood) I was so scared, and she was probably even more scared. She sat by my side holding my hand comforting me, telling me that a blood transfusion would only help me. She was honest that I might need surgery to stop the bleeding. And I trusted her, I still do, she's a nurse and she knows what she's talking about. That trust is important to have when your young and you don't necessarily know everything that is going on.

3) Stay as healthy as possible (whatever it takes).

My mom was ALWAYS on my back about doing my treatments and taking my pills. Even when I cried about it she was still persistent. She always said "It will only make you feel better" or that if i didn't do it, I would have to go in the hospital. This was enough to make me shove my nebulizer in my mouth! Sometimes, she even pretended to call the doctor to tell on me! I hated when she did that.. but she was only doing it to keep me healthy, and it worked! Now I know that I have to do my treatments because it will help ME and because she made it a daily necessity, I now see that doing everything I'm supposed to is ABSOLUTELY NECESSARY!

4) Make things fun:

Every doctors appointment was an adventure for me and my mom. Whether we sang on the car ride there (we still do), or went to a fun place in boston, we always had fun. She would get me a gift from the gift shop, or take me to the Enchanted Village (a Christmas display). Sometimes we would go out to eat to Friendly's or the Hospital Cafe. In the hospital, she brought me games, movies, and crafts to keep me entertained. She would even bring my friends in to see me! While I was doing treatments she would play games with me or just sit and chat with me. Every thing I had to do CF-wise, she made it fun. And this made everything A LOT more bearable!

5) Live your life to the fullest, and don't live in a bubble:

My mom taught me to "dance like no one's watching." She didn't put me in a bubble because I had CF. I played in the cold, did sports, got dirty, and stayed up late some nights. She never told me I couldn't do something because I had CF. Even when I missed school for 2 weeks she made sure I was doing my homework and staying on top of things. One time, I was in the hospital for my first formal dance in 7th grade. She wouldn't let my CF get in the way of living my teenage life. She convinced the doctors to let me out for the night, even though I had just come out of surgery for complications after a sinus surgery. She wouldn't have done this if she didn't think I could handle it, and she waited outside the dance for 2 or 3 hours in case anything went wrong, and let me enjoy my formal dance. CF hasn't stopped me from living life because of my mom, and because of that I am able to remain positive.

If you are a CF parent, I hope our "rules" have helped. If you would like to comment or ask my mom anything her email is mamabombo@comcast.net.